Minnesota Rare Disease Advisory Council

[Minnesota Rare Disease Advisory Council @MNRDAC]

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[Minnesota Rare Disease Advisory Council @MNRDAC]

Thank you @RareDiseases for the stuffed zebras! We gave them out at the MN State Fair as a way to educate the public on rare diseases. A great conversation starter!

[Minnesota Rare Disease Advisory Council @MNRDAC]

who worked hard in the past legislative session to improve care for the MN rare disease community. Come meet some of them at our state fair booth on Sunday to thank them as well as let them know what matters to you and your particular rare disease community! PT2

[Minnesota Rare Disease Advisory Council @MNRDAC]

The MN Rare Disease Advisory Council is so thankful for our legislative members Representative Tom Murphy, Representative Liz Reyer Senator Julia Coleman, and State Senator Kelly Morrison, PT 1

[Minnesota Rare Disease Advisory Council @MNRDAC]

Are you planning to stop by our booth at the State Fair on August 27th? RARE is not RARE, and our agency is making that known!
Wear your zebra stripes to show support for the rare disease community. @GovTimWalz @WCCO

[Minnesota Rare Disease Advisory Council @MNRDAC]

Hey you! Are you interested in staying in the "now" with The Minnesota Rare Disease Advisory Council and what our agency is up to?
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https://t.co/c4sPKzhXZ8

[Minnesota Rare Disease Advisory Council @MNRDAC]

The Rare Disease Advisory Council is setting up a table with goodies and swag to meet with the community, educate others on what we do, who we help and spread our agency mission to reach as many individuals as possible.
*** Stay tuned for the exact dates we will be at our table

[National Organization for Rare Disorders (NORD) @RareDiseases]

New #InflationReductionAct guidance from @CMSGov threatens #RareDisease drug development. Check out NORD’s statement on today's finalized guidance on the Medicare Drug Price Negotiation Program: https://t.co/7cMHX33Esu

[Minnesota Council on Disability @DisabilityMN]

MCD at @TwinCitiesPride. Everyone belongs at the table. We are proud to partner with Disability Hub MN, MN Gov's Council on Developmental Disabilities, @MNRDAC, @WildernessINQ, & MN DHS Deaf and Hard of Hearing Services. Come visit all of us.

Details: https://t.co/w4r8RaVVlH

[SickleCellMN @SickleCellMN]

📢 ONLY 3 DAYS AWAY!

RARE Town Hall: An Open Forum for #patients, #caregivers, #providers and allies of the #RareDisease #Community

🗓️ Thu June 29
🕐 6PM (CST)
🖥️ https://t.co/aiiXfUFaWb

See you there!
#togetherwecan #RAREmatters

[Hennepin Healthcare @HennepinHC]

Here for #pride. ❤️🧡💛💚💙💜💗🖤🤍🤎

[Minnesota Council on Disability @DisabilityMN]

We’re already beginning to prepare for the 2024 legislative session, and we need your help to make another impactful one for people with disabilities! Complete our 2024 Public Policy Survey to tell us what you want to see in legislation next year: https://t.co/tZqUuKbwWe

[Minnesota Rare Disease Advisory Council @MNRDAC]

Thank you to everyone who showed up to our listening session! We appreciate all our PAG and the ongoing support.
We will continue to work towards our mission as an agency, which is to provide advice on research, diagnosis, treatment, and education related to rare diseases.

[Minnesota Rare Disease Advisory Council @MNRDAC]

Welcome to the official Twitter page of the Minnesota Rare Disease Advisory Council!

Click the link and see what we've been up to this last year since becoming an executive branch, non-cabinet state agency in 2021.

https://t.co/6WwwocXU8I